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Wednesday, September 22, 2010

9.22.10 - Day 20, 21 and 22: Therapy and Firemen

The future of Team Liam!

We laid low the first part of the week, as we received some discouraging findings Monday evening. Monday, our new feeding therapist came to do her evaluation of Liam. More on that in a minute. Needless to say, Liam was exhausted after the appointment was over at 6:30, so we decided we'd best tube feed him and put him to bed. Tuesday was a typical day with Grandpa at my parents house. Dustin and I got in a much needed mini-date night at home before going to pick him up...it was nice. I miss that.

And then today, we doubled up on outings! First it was Sushi time with my good friend Jo and her son. We dined at our favorite Sushi house, a normal meeting place for us. It was fun - Liam always eats better when we are out (I think he does very well being distracted), so it was nice to see him eat a full jar of baby food for once. I haven't seen him do that in awhile. Although, I am not doing a good job at sharing our Team Liam fundraiser, as I keep leaving behind the information when I go places...Dustin is a much better advocate!

After sushi, I cam home and whipped up some Sopapilla cheesecake (mistakenly a "fat free" version, which I had to apologize for not being the real thing!). We went and visited the firemen at our local Fire Station. Since we live on firetruck alley (the main route the trucks use to get to the freeway that is near our home), I know that they are some of the most hardworking men I know. So we went to drop off some dessert and say thanks for all they do for our community. Plus, we got a few good pics in front of the big red truck as well.

So let me touch back to Monday night. The feeding therapist evaluation of where Liam is at, as an oral eater, is a much more cautious approach than what we have been given since the swallow study was done a month ago. Dustin and I really haven't had a lot of direction up to this point, as to how to progress his feedings and oral liquid feedings, because we have been trying this whole time to secure a separate therapist for just feeding. His OT has mainly been doing the physical therapy part since by the time she gets down with that, Liam is exhausted and wants nothing to do with feedings. So that said, we had been trying various bottles with water or juice, and at first Liam really seemed to be catching on and liking the bottles. He would always cough some if he got to much or drank too fast, but we never worried because he always seemed to clear it and we never had a scary "aspiration" moment...or so we thought. But lately he has wanted nothing to do with liquids. We also started feeding him stage 3 foods and the baby yogurt puffs a few weeks ago, and again, he seemed to really like them and does fine with the texture. But lately, he has not been interested in these foods either, except for the yogurt puffs, which we have to closely watch him eat to make sure he can handle them.

On to the therapy session. She asked me all the background info and developmental questions....Is he babbling, is he sitting up well, crawling, walking, etc.....Then she watched me do an oral feeding with Liam. He initially seemed hungry and excited at the yogurt I was going to feed him. He ate few bites really well, then started to be a little protective of his mouth with his hands (normal for him). The therapist then wanted to see how he was doing on liquids, so I got a Podee bottle with juice, but Liam was not having it. She then suggested that I feed him liquid via spoon, which I had never done before. So I did and immediately he started coughing after the first spoonful. Then the second, he "definitely aspirated" and had a deep coughing spell, which made him very upset. Not good....

Basically, we received the news I had been suspecting, that he is still aspirating liquids and is at about a 6-9 month feeding level. She basically, in a very nice and supportive way, told me that everything we had been trying with Liam, was not appropriate for him based on where he is at right now. Making steps forward suddenly went to taking big steps backwards. We have been praying for Liam to be a complete "oral" eater since birth...I am discouraged, I'm not gonna lie. But I also feel extreme guilt....I feel like I took risks with my sons care I should not have. I am upset because I didn't know what I was doing, didn't ask enough questions, seek enough advice....when will this stop? I am tired of navigating this without a map, even though one doesn't exist! Monday, was not a good night for us.

The feeding regime for now is much simpler than before. Tube feedings 4 times daily, stage 2 baby foods, and no liquids by mouth unless thickened. The therapist is going to start doing Vital-Stim therapy twice a week, which I am anxious to get started. I have heard really good things about it, and it has been something the therapist have been talking about doing with him since before his surgery. We are praying that we can start moving forward again...